Autistic Artist

To Be or Not to Be

So here I am being myself. No, I'm not drunk. That's just me. I'm dancing the Maypole and having fun.

These are the kinds of pictures I used to throw away. But now I'm trying to learn to accept myself as I am, not as so many others want me to be. This is the photo I've submitted to the Autistic Adults Picture Project.

Most of my pictures were like this, or worse, or not much better. My grandmother used to say that I was one of the most un-photogenic people she ever knew. My brother was constantly embarrassed by me in social settings. That was because, from his point of view, I just looked like a dork most of the time.

I've worked awfully hard all my life to fit in. In our society, for a woman to look "normal" is to look as attractive as possible. Finally, I can do it for just a little while with an enormous amount of work. So I limit my contact with others. For example, at first, I refused to dance the Maypole, knowing that the concentration I would need to keep me from falling flat on my face would make it impossible for me to pretend to be anything other than what I am -- autistic.

Compare this photo with my carefully arranged one (at the top of this page on the right) where I'm working very hard to look neurotypical.

So it seems that I always have a difficult choice. Either I look like a dork which turns people off, or else I work hard to look "normal" with the result that some people tell me I'm too high functioning to have any problems. I just can't win!

Services for Autistic Adults, Part 1

Here is the statement I recently presented in writing to the California Legislative Blue Ribbon Commission on Autism on July 6, 2007.

Special thanks to those on the ANI list and the Autistic Adults list who gave me input, especially Todd Jacobs, Helen Alexander, and Ari Ne'eman, as well as Bradley Finberg.

Senator Darrell Steinberg, Dr. Barbara Firestone, and other members of the California Legislative Blue Ribbon Commission on Autism;

I am Arielle Finberg, and I was diagnosed with Asperger's Syndrome. Although Asperger's Syndrome is a so-called mild or high functioning form of autism, those of us who live with this disability generally experience our condition as neither mild nor high functioning. Although many of us have average or high IQ's we often have difficulties as adults holding jobs and maintaining relationships. Often, we cannot even get the medical help we need.

For example, with respect to employment, I have seldom held a job for longer than a year. And because of difficulties in relationships, I presently have no contact at all with my family. As for access to medical help, I was recently turned down for medical insurance due to conditions related to Asperger Syndrome.

If I had not had good luck and help from friends and loved ones, including my wonderful husband, I believe I might be living on the streets right now.

Tragically, many of us adult autistics have not been able to speak out for ourselves. For example, I know in the past I would not even have been able to get to this meeting! So I would like to take the opportunity today, if I may, to express some our needs.

1) Expert panels, such as this one, should include one or more autistic adults to represent the autistic community. Those of us who can, work and pay taxes, including myself. To not be included in such a panel is essentially taxation without representation. (We just celebrated a national holiday based, in part, or eliminating such situations, didn’t we?)

2) Proposed services should address the needs of autistic adults in addition to the needs of autistic children and their families. For example, we need better services to accurately diagnose adults. I personally know those who paid thousands of dollars and took years to get diagnoses. Those individuals are rare, however. Most of us do not have the money or access to experts to be diagnosed at all.

We need ongoing services into adulthood.  Many people think that just because some of us are smart, life is easy for us. But, in fact, gifted adults with High Functioning Autism and Asperger's Syndrome are "doubly disabled." Although I may look “average” to you, in fact, I am not. And having to live up to societal norms while having to cope with the daily challenges of communication difficulties, sensory overload, and motor difficulties, just to name a few, is taxing, psychologically, physically, emotionally, intellectually, and socially. Even after a short public meeting like this one, I will likely go home exhausted.

Helpful services could include medications to deal with sensory issues, anxiety, and depression; ongoing, lifelong counseling to assist with both psychological issues and every day real world social skills, interaction, and training; specialized career development with placement in targeted job environments; and, finally, educational programs and learning environments that are customized and accommodative to the unique needs of adult autistic students. It would also be helpful to have continual autistic ombudsman/outreach support to the employer community.

3) Funding should also address support and integration services for teens and adults (as opposed to being strictly school- or education-focused). For example, we need "safety nets" for adults with Autism and Asperger's as they leave high school, such as a “warm-line” telephone service to address ongoing mental health issues (such as depression), job issues (such as firings), or social issues (such as when we suffer financially, unable to keep roommates and unable to even fill out paperwork for medical or disabled services).

So far, those most vocal in addressing the needs of autistics focus on children, and those needs absolutely must be addressed. But I ask the Commission here today, to remember that children grow up. And at present services for adults are inadequate. For those adult autistics who have extreme difficulties, such services will help alleviate misery and hopelessness that few can imagine. And for those of us labeled “higher functioning,” even just a few educational and integration services would allow us who can to become successful at supporting ourselves and contributing to society.

Thank you for considering these needs.

Single Attention!

I had an excellent conversation yesterday with Branson, my honorary brother. Branson knows about autism and has worked with disabled adults.

So when describing a recent perseveration of mine, Branson said "Have you ever noticed that when a neurotypical does it it's called "persevering," but when a autistic person does it, it's called "perseveration?"

Rory Hoy talks a little about autistic perserverations in his short award winning film, Autism and Me.

I just loved it.

And here's a newspaper article about Rory and his film.

Logic and the Average Aspie

I very much enjoyed reading Bev's post: Logically Speaking. Bev reports she had some trouble in her philosophy class despite her logical leanings.

Reframing the Glass

We Aspergerians tend to take things literally. That is, we don't always understand "sayings" and "expressions." They're confusing to us. When my mother used to say to me, "It's no used crying over spilt milk," I'd always look around for the milk on the floor!

In fact, some sayings can become major annoyances to us. For me, I hated the "glass is half empty or half full" thing with a passion. I wanted to say to the person, "Are you daft? The glass is half empty and half full! Didn't you take simple arithmetic in school?"

But, of course I didn't say that. By the time the Glass phrase was part of pop psychology, used to determine whether a person was positive or negative (as if there were only two choices in life), I was old enough to realize that I would have hurt the person's feelings. Plus, they would have thought me arrogant for being mathematically precise.

Problem Solving with Temple Grandin

Dr. Temple Grandin, designer of livestock handling facilities and a Professor of Animal Science at Colorado State University, gave two presentations yesterday, February 14, at Freeborn Hall at the University of California at Davis here in Northern California. Dr. Grandin's autistic directness made for very lively and and entertaining talks.

Dr. Grandin's presentations overlapped. She described her own history and experience with autism and how autism inspired her work (especially with animals). She also shared ideas and advice to help autistics. The well-attended presentations were sponsored by the MIND Institute.

Here are some of my impressions and reactions to the presentations. I'm sure I could make several long posts regarding many of Dr. Grandin's comments, but I'll keep to three relatively short points here.

The Daily Life

Marla's comment here on my site gave me a lot to think about.

I don't know about where you live, but where I live, the cult of positive thinking is required. Even a hint that one may be sad or that one is criticizing (no matter how justified) can be seen as "negative" and is to be shunned or avoided in public, even among friends and relatives.

I've tried to keep this blog positive, because, as we say in Calfornese: "nobody wants a downer."

But the fact of the matter is that no one can talk about Asperger syndrome and autism without pointing out that many of us, maybe even most of us, do have great difficulties just getting through each day. What is routine for those of you who are not autistic or disabled can be insurmountable for those of us who are. And since Asperger's Syndrome is an invisible disability many around us think we are doing just fine. But that is so far from the facts.

In 2007

Moping around is not an exaggeration. This was by far one of the most difficult holiday seasons I've ever experienced.

I've had too many changes in the past year. I think the enormity of all has finally hit me. I feel like I've been knocked down.

Words and Poety

My early Chanukah gift from my husband was a new digital camera. It is really sweet, but you can tell from this photo that I haven't really learned how to use it yet, although no one can accuse me of being a giant in photography anyway.

This photo shows a very Asperger Syndrome thing I tend to do. I do love to line things up. I'd been wanting a magnetic poetry set for years, so I bought this one last year called "Writer's Remedy," which is geared toward clearing away writer's block. I don't have writer's block and never did. But I thought it might be inspiring to play with the words.

So how did I play with them? Did I arrange lots of poetry? Nooooo. I finally took the words out package (an old fashioned looking apothecary-style medicine bottle) a couple of months ago. I did play with one poem, then proceeded to sort all the parts of speech and line them up. That was the most fun part!

Well, the poem I wrote was during the Halloween season. It is in the upper left of the photo and reads:

Kind yes,
trap not a burned skeleton
but give me an orchestra of ghosts
and curse genius
then, spying on old friends,
I would release my shadow from sweet memory.

I have absolutely no idea what it means. I think it needs to go in my journal with some artwork.

My Special Interests

Part of the definition of Asperger Syndrome is to have one or more special intense interests. We are so fascinated by these things that we engage in them for hours, can become very upset if interrupted, and can ramble on about them to others without even realizing that our audience is as bored as a lumber mill.

I have a number of special interests, and many of them concern using my hands to make things. Many of my hobbies are mathematically based or deal with lining things up or putting things together in a certain way, such as grid-based embroidery and beadwork, book binding, strategy computer games, origami, and pieced quilting. I'm especially fascinated by miniatures and working with very tiny parts and units. I am hyperlexic and can read up to three books per day.

I don't like interrupting my engagement in my interests to do something else -- like eat or go to the bathroom! -- and get incredibly bored being around those who don't share my interests.

And, in turn, I can bore current and potential friends by talking too much about things that interest me, leaving them out of the conversation entirely. (Right now I am taking coaching lessons to correct such behavior which, understandably, looks deliberately rude but is often unconscious on my part. What do you mean, you don't think number theory includes some of the most sublime mysteries of the universe? How could I have possibly guessed that you were not as fascinated in this topic as me?)

As a child I never fit in with my peers. I was not interested in any of the popular things like fashions, music and most TV shows (unless they were science fiction or fantasy, and that was when neither was very popular).

My special interests profoundly affect the creative things I choose to do. For example, I've written two science fiction novels (currently seeking a publisher), while science and mathematics images appear in much of my visual art.

Motor Skills

I was incredibly clumsy as a child. I cannot overstate this fact. It was almost impossible for me to be able to catch a ball or throw one. My family and the local kids made fun of me for my lack of coordination. Kids would do almost anything in school not to have me on their team because I was so bad at sports.

Ironically, I loved moving and being in motion. I loved to run and jump. As a child I rocked and spun around. To this day I like non-competitive sports and have enjoyed walking, kung fu, and bicycling (although I didn't learn to ride a bike until well after the other children, at age nine or so). But I have severe acrophobia and am always afraid to climb on things like a bike. (I am hoping eventually to buy a recumbent bicycle which is much lower to the ground.)

I also have issues with balance. I often feel disoriented when walking, and the slower I walk, the worse it is. I often crash into doorways and furniture. It is not uncommon for me to have bruises and not to know how I got them.

Communication

Our ability to communicate impacts our ability to work with others and to make and keep friends. I think that communication is perhaps most important issue affecting anyone who is autistic.

Communication for us is very complicated. For example, autistics are highly visual and many, if not most, prefer to communicate visually. Many of us are non-verbal entirely. And those of us who are verbal still have great difficulties conveying our meaning to others.

I'll be exploring the many facets of communication and autism in future entries. For now, here is a very brief history of my own communication difficulties.

Asperger Syndrome is differentiated from other forms of autism by a facility with language. I have always loved to read, and people tell me I seem quite articulate. I also, as you can tell, write fairly well (keep in mind I have had more writing classes and workshops than I care to count).

Yet, I have always had great difficulty communicating with others. My grandmother often said to me frequently: “You don’t communicate.”

When I try to communicate, I feel that people don’t listen to me or even hear what I say. Other times, people tell me I talk too loudly and too fast. And even though I can ramble (usually out of nerviousness or when discussing one of my special interests), and have been called a "chatter box" by some, I actually don't like to talk at all!

I find conversations to be a huge amount of work and quite exhausting. Whenever I know I have to talk to someone, I feel like I'm preparing to run a race physically. I wish there was some other way to communicate with people besides talking.

I don't know how soon I spoke as a child, but I believe I was talking by age three, certainly by age four. Then, what I said often got me slapped or verbally assaulted for reasons which were, and usually remained, a mystery to me. I can still lose friends over saying something stupid that I do not realize is stupid.

I have extreme difficulties understanding audio lectures and directions. Since many employers train their workers by giving fairly complex verbal directions, I usually flounder in work situations compared to fellow employees. I can only learn something by watching others and having something visual -- a chart or diagram is much better than written paragraphs, for example. Then must do the required task myself in order to learn it.

Just having someone tell me what to do and then walk away will not work. Because most people think of me as very smart, they get very confused when I later act like a moron because I cannot follow directions.

Sensory Overload: Taste

Most things I’ve gotten better at eating since childhood, but I still do not like slimy textures and will not eat most custards, tapioca, most tofu, eggs which are runny or too moist. They make me gag.

Sensory Overload: Smell

I can smell things others cannot. Often I will smell something, but others won’t believe me until they see the evidence for themselves.

For example, I smelled something really bad behind my dishwasher, but the landlord insisted there was no problem. My roommate did not smell it either.

But when the landlord took the dishwasher out to replace it, he discovered a dead mouse back there!

Also, I smelled burning in our house which neither my room mate nor my landlord could smell. But when the landlord went into the basement, he found the heating unit burning up! In fact, he said that my sensitivity to scents probably saved the house from burning down.

Some scents are so noxious to me I cannot bear them at all, and they will give me a headache (certain perfumes or herbs). I will also get a headache from walking down the detergent and household clearner isle in the supermarket.

On the other hand, some things smell wonderful to me that I think shouldn't. I love the scent of oil paint and turpentine. I love the scent of vinyl.

Sensory Overload: Tactile

I have to have soft clothing. Usually I prefer cotton, although linen is okay, the older the better (as it can become very soft).

Tags in clothing bother me, and I have learned to cut them out or completely remove them, if possible, with a seam ripper. I love some of the new clothing with the tags sprayed on the inside back top, near the neck opening.

Some polyesters, acetates and nylon can chafe my skin. I cannot sleep on sheets that have any content of polyester in them -- they feel like fire on my skin.

It was very traumatic when I was a child when my mother washed or brush my hair. Also, when I was a child bathing caps were in style, and the kids all wore them, but they always gave me a headache. My mother told me that, when I was three and four, wearing certain clothing made me run around the house screaming.

Sensory Overload: Visual

I intensely dislike florescent lights and seem to have a hard time working under them. I can see them vibrate which seems to tire me. Often they emit sounds I find annoying.

Also, most CRT computer screens and some TV’s bother me, and I cannot bear the digitized look of HDTV if it is a relatively inexpensive set. I have a hard time living in (or working in or traveling through) areas where there are bright large signs, visual clutter, disorganization, and piles of things everywhere. (People have commented than my décor is spartan, although I don’t think it is).

Currently, I do much of my artwork under Ott lamps which are florescent. I love the fact that they show everything in "true color." However, they are florescent. I have not yet decided whether or not to go back to incandescent light nor not. Sometimes something can bother me subconsciously, but I won't notice it until it is too late, and I have become over-stimulated. I do know the Ott lamps sometimes put out an atrocious hum that I can barely stand.

The other evening I did some journaling under and incandescent lamp in the evening, and it did seem I was more relaxed and better able to work longer before getting tired enough to stop.

Sensory Overload: Auditory

One of my biggest challenges is one which plagues many autistic people namely, that of sensory sensitivity. I am so sensitive that it is very easy for me to become overwhelmed and exhausted. Even a visit to a grocery store with all its advertising, music, children screaming, florescent lights, and navigating around people can make me too tired to do much when I get home.

In the next few days I will be sharing some of those sensory issues and describe how they affect my experience.

I am highly sensitive to sounds, and many sounds bother me, especially high pitched sounds, babies crying, transformers, my computer drive, digitized music or podcasts if the resolution is low, whining from radios or speakers. Apparently, I can hear sounds that only animals such as dogs can hear.

Many sounds that bother me either do not bother others or bother them far less. While I can consciously "tune out" a sound, it can still subconsciously affect me enough to overload me in a short time.

Someone Else, Part 5

I learned I was experiencing an unusually difficult life -- along with perhaps point five percent of the world's population.

I learned I had a serious, rare, incurable, and invisible disability. I learned that I am autistic.

I was diagnosed with Asperger's Syndrome.

How could I have not known?

Because my environment during childhood and youth had been unusually difficult, I had become a super survivor. I had attempted to mask my autism from the rest of the world.

But through that mask others saw a wierdo, or an eccentric. They imagined they saw an arrogant and negative woman -- or all those other things people called me.

In the end, with no other explanation, I had drawn the faulty conclusion that that everyone experiences life as a confusing mass of experiences just like I do. And I had convinced myself that they were merely better than me at masking their own failures to perform, socialize and communicate.

I learned that there were neurological reasons why l was smart and talented and hardworking, but had gotten absolutely nowhere in life.

I learned that the signs of my autism had been there all along, but the time and place of my childhood had made diagnosis and help impossible.

After half a century of struggling as a human being on every level, I finally learned that my every day experience was very different from everyone in my circle.

Now I am facing the fact that there is a stranger in my house.

And she is me.

What if you woke up and found out you were someone else?

Someone Else, Part 4

When I asked for advice from friends, coworkers and acquaintances, including other writers and artists, they called me a "whiner," or said I was "arrogant" and that seemed to have an air of "entitlement," or that I was "being negative." Several people said I should be grateful I was so "lucky" because I wasn't plagued by depression or rebellious children, or difficult spouses, like they were.

So I believed they must be right. I shut up. I did my best to work even harder. I networked. I took classes in job interviewing. I asked managers how I could be a better employee, then I acted on their suggestions. I worked with counselors and asked them specific questions, then put their answers into action.

But no matter what I did, no matter how hard I tried, I couldn't juggle all the roles I was supposed to play. I just bungled along in life, swallowing my pride, taking the criticism, and working harder.

"Thinking positive" and "saying affirmations" had became my major life's project. All I had to do, I was told and believed, was follow the law of attraction. Hard work and postitive thoughts would make success magically happen.

And I was so good at it that I created a delusion for myself (and others) that everything was okay.

Then, one day, through a series of serendipitous circumstances, every belief I had held about myself, my life, and my world, changed.

I finally found out that difficulties of my life were quite real. And negative thinking had nothing to do with it.

Someone Else, Part 5"
Someone Else, Part 1"
Someone Else, Part 2"
Someone Else, Part 3"

Someone Else, Part 3

When I was nineteen my professors had considered me very bright and promising. But in my forties I felt I was working long hard hours to just keep my head above water.

If I managed to keep a job for more than a year, I considered it a miracle. If I could keep a friend for more than six months, it was an even bigger miracle.

I was in constant anxiety. I was in debt. One of my biggest dreams had been to have my own house. But unlike virtually all of my friends my age, I had none.

I had no family. I had a hard time keeping relationships. And I didn't even have children because I knew I could barely take care of myself, let alone someone else.

I could understand my failures, perhaps, if I'd been stupid, lazy, an addict, or a law breaker. But I was none of those things. I was told I was smart. I was hard working. One boss even told me I got twice as much work done in half the time as any of my coworkers. And I was law abiding. I had never even gotten a moving violation.

So why had my life turned out to be a big zero. And why was I perpetually going nowhere?

Someone Else, Part 4"
Someone Else, Part 5"
Someone Else, Part 1"
Someone Else, Part 2"

Someone Else, Part 2

For years I had thought of myself as an ordinary person who happened to be a writer and an artist, albeit a struggling one. But often my life seemed more than the average struggle.

My artist and writer friends were philosophical about their own lives. They plugged along at a job or career, had families, attended social events and were members of societies while doing charitable work. They saw all of it as part of who they were and still managed to make art.

Me, I couldn't work a day job and have any energy left for my creative endeavors. Going out shopping for even a couple of hours left me exhausted. Driving on the freeway left me rattled for a whole day.

And an upcoming social event would bring on horrible anxiety attacks. Oh no! I would have to be around all those people! Worse, I knew that I would be likely to do or say something that would cost me a friend forever. And usually, I wouldn't even know what it was I said...

I didn't understand why I was having so much trouble juggling all of the components of my life. Now I was hitting middle age with nothing to show for all my hard work.

Someone Else, Part 3"
Someone Else, Part 4"
Someone Else, Part 5"
Someone Else, Part 1"

Someone Else, Part 1

What if you woke up and found out you were someone else?

Our society is filled with stories of characters who turn out to be someone else.

You know what I mean, like the escaped prisoner who turns out to be an innocent man. The amnesiac who is really a spy. The grungy loafer who turns out to be an accomplished, hard working millionaire. Or how about the tough gal who is an angel underneath?

Well, imagine that one day you discovered yourself to be the stranger. What if you learned you were quite different from the person you had perceived yourself to be for years? For decades? For your whole life?

That's what happened to me.

Someone Else, Part 2"
Someone Else, Part 3"
Someone Else, Part 4"
Someone Else, Part 5"

About This Blog

Autistic: a person who has a life long neurological condition, characterized by great difficulty in communicating, forming relationships with other people, abstract concepts, and by unusual and repetitive behavior.

Artist: a person who practices any of the various creative arts, such as a novelist, poet, or painter.

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In 2006 I was diagnosed with the rare neurological condition known as Asperger Syndrome, a disorder on the autism spectrum.

This blog is about my discoveries of this little understood genetic condition and how I believe my art comes, at least in part, from that condition.

This blog also documents a life experiment. Can I minimize the detrimental parts of this disability while using the unusual and wonderful parts of autism to enhance the quality of my life?

I invite you to come with me on this journey.